Lost My Domain for We Will Go On but Got it Back!

Dear Blog Readers-- I made an error and allowed my domain name to expire. I am happy to say that I have restored my domain and that my blog is once again up and running. It was only a matter of 9 days, so I think it may have gone unnoticed. There is a bit of a fee (like a "fine"), so that was frustrating.

Thanks for supporting my blog. I will be writing an entry and announcing it soon. I plan to talk a bit more about Corticobasal Syndrome and how it is that I have two rare Parkinson's Plus syndromes at the same time. No, on second thought, I won't be explaining that, exactly, but I will be posing that impossible question, "How is it that I have two degenerative brain syndromes?!" Hey, I am here and I am still singing and picking so we have much for which to be grateful! -- Patient-Online

Standing on the Brink of Sharpening Diagnostic Focus

It has been difficult to understand, let alone explain to others.  So many family, friends, contacts and fellow patients are following my story.  I started writing this blog in 2006 and though I took this site down for a year or two, it is out of that same effort that my pursuit for truth continues.

I want to clarify: it has always been clear since February 2006 that I have an Atypical Parkinsonian Disorder.  This much has never been in question.  My original Neurologist made it clear that he thought I had "So much more than Parkinson's Disease" in 2006.  He saw it as Progressive Supranuclear Palsy or Shy Drager ( the synonymous term is Multiple System Atrophy). Now, years down the road the condition has progressed considerably, but my overall strength and heartiness has sustained me.  Well, I am still here, right?

When our great neurologist left our clinic, I was fortunate to be referred by my Primary Care Doctor to a Movement Disorder Specialist in a nearby community.  Since, I have been seeing her every 5-6 weeks.  She has conducted a number of essential tests, including a PET Scan, which showed that I had cell degeneration bilaterally in the basal ganglia, the movement center of the brain.  I have also had a DAT Scan, which indicated degenerative effects in the Frontotemporal area on both the left and right sides of my brain.

To date, my diagnosis continues to include Multiple System Atrophy with Parkinsonism symptoms.  This means I share movement and balance symptoms that Parkinson's Disease patients have and yet so much more.  My eye movements are more and more limited, with my ability to move them up and down and side to side becoming gradually more restricted.  I also have autonomic dysfunction which results from a loss of neurons in the areas of the brain that govern the automatic functions of our bodies:  Urinary, Digestion, Bowel, Swallowing, Breathing, Blood Pressure, Body Temperature and Heart Rate.  These are experienced in a much more severe manner than in typical Parkinson's, although no Parkinson's patient escapes these problems -- the difference is it occurs in the first few years of Multiple System Atrophy and may occur after a decade or more in P.D.

I have had changes in medications to determine what side effects might be influential in my symptoms and have also had blood tests to check for genetic mutations or inherited diseases.  A scope was put up through my nose and down my throat and resulted in the realization that I have a condition gradually paralyzing my vocal chords, which threatens my ability to breath in the long run.  I am aware of the potential of a tracheostomy procedure to make an airway below my vocal box in order to prevent aspiration pneumonia and also to head off the real possibility of breathing obstruction.

I am grateful that I have a committed top neurologist who specializes in patients with rare neurodegenerative diseases, along with Parkinson's Disease.  We will be seeing her again soon and hope to get a sharper focus on what is bringing about these deadly physical threats to my longevity and have stolen my life from me-- career, driving, social life and freedom to walk around in the world.  It isn't that I can't accept the reality, it is more that to have a definitive analysis would be a gift bringing peace to my soul and spirit.  My dear family would know of what I am referring to and share my desire for such clarity. -- Patient-Online

But He knows the way that I take; when He has tested me, I will come forth as gold. -- Job 23:10 (NIV)

Kneeling in Reverence is Not Unpatriotic

A dear friend shared a New York Times article with me about thoughtful discourse and the lost art of disagreement.  It is found here:  "The Dying Art of Disagreement".

Though I am not sure what turn of events may have prompted such an article sharing, I do have some thoughts running through my mind that relate to this article about the lost art of disagreeing. 

I am challenged by the fact that upon my agreement with the NFL players taking a knee during the "Star Spangled Banner", that Trump called out after things had grown peaceful ( the S.F. quarterback’s stand took place last year, not currently, and yet the President brought it up), I too am taking a knee in my heart.  I love the American flag, patriotic music and had a lifelong love affair with these vital symbols as a student, teacher and school principal serving as the chief patriotic leader of my public school community. With this in mind, some clarity of symbols and their meaning must be related. 

The cloth of the US Flag is not worth as much to me as the lives of my fellow black Americans,* as a key group that I am standing with because I feel compelled to do so.  As Jesus said, the "Sabbath was made for man, not man for the Sabbath." In other words, "moral practices are instituted for the good of people, rather than people being created to serve rituals and traditions," (my words).  Thus, this patriotic symbol’s moment of honor is taken as an opportunity to point out a greater issue affecting all of humankind, if not all Americans: that of racial, cultural, gender, sexual (preference), differences in ability (disabled-- such as myself), and religious fairness.  

Unfortunately, our President unintentionally calls on me because of his obvious lack of understanding of diversity and fairness, to respond in a meaningful way.  Choosing to kneel during the Star Spangled Banner does not mean that those of us doing so are not supportive of the military effort.  To the contrary, it is in honor of this great service they provide, as our fathers, mothers, brother and sisters before us, did as well.  Military, although arguably the highest form of patriotic expression, isn't by any means the only way to demonstrate love of country.  

I belief it has to be clarified that the flag isn’t solely what our armies fight to protect, in my own humble opinion, it is also the civil rights of all Americans,* and also their right to speak up when they see injustice or hear it, for that matter.  Mr. Trump did not need to yell, “Get the S— O- a B---- off of the field!”  This drew all brave and loving fathers playing in the NFL to take a stand by kneeling. They are showing respect for their country and quietly and respectfully letting their families, fans, and the world know that they are not appreciative of the attitude that the President demonstrated when he brought this up during a post campaign rally in Alabama last Friday.

This points back to some actions of law enforcement that violently targeted black Americans during traffic stops and other public encounters with police officers.  This behavior by officers represents a very small, but important percentage of the police force in these United States, but shouldn’t be ignored.  No one can honestly deny the systemic racism that must continue to be addressed and wrestled with as a serious safety and economic issue in our time.  

As Jesus would point out, it is more important to meet the needs of human beings (civil rights) that to salute a beautiful and emotionally connected symbol that I spent 30 years teaching children to respect. The flag is likened to the Sabbath and the needs of the sick needing healing on the Sabbath are likened to the civil rights of all Americans.  I do still love and hold the flag in a place of great honor, such as displaying it on our doorstep for national holidays.

There are times when symbols are provided as a tool for teaching placed in the right hands in the proper moment. As an illustration, I never ridiculed the very few religiously objecting students for standing in class during the “Pledge of Allegiance” without saluting.  They were doing the honorable thing that they were brought up by their parents to do and in that way, they were honoring the values of our country. The right thing to do was to support and not embarrass these students in this moment, as it would have been right for the President to not have called this player vulgar names or his mother, for that matter.  When the President ridiculed a disabled man for his movements, very similar to my tremors, he dishonored the civil rights of neurological patients and differently abled persons everywhere, including those with Parkinson's Plus, Parkinson's Disease, or another specific brain disorder among many other disabling conditions.

We should honor the people and the values the flag stands for even above the cloth itself. As in another application, Jesus is the Word;  the Tyndall House leather covered Bible is very special, but no one translation or red letter edition in the form of a published book is more important that Christ Himself, the true and living Word of God.  

We can discuss matters such as this by respecting, loving and appreciating each other’s point of view.  There is no need for name calling or for accusing one another of not loving the country, the flag or of dishonoring fellow Americans who serve or served in military commitment.  In the face of a President who is challenging for a good 60% of the citizenry of this country to understand when given his honest admissions of dislike for diverse peoples, whether condemning NFL players demonstrating in a quiet and peaceful manner, or his stated belief that Latino Americans are criminals that need to be kept out or deported, we have to provide for an exchange of ideas and concerns, and both sides need to allow for this. 

Calling one group, “Bigots” or another “Unpatriotic” is also a right, but doing so may cause more harm than good.  I would like to think that we can come together, share our thoughts without name calling or labeling and then gain some understanding and each have an opportunity to grow and change.  This is something I welcome from the top, in our Nation’s leader, the President, and thanks to this article, I will hold myself accountable for, as well.  -- Patient-Online

**Thanks to my wife who shared the idea of the "persons represented by the cloth of the flag" concept with me and the "civil rights being protected by the actions of our military being as important as the flag they fight to preserve," as well.  She has insight and it makes so much sense when she shares ideas with me.  

PET Scan and Corticobasal Degeneration

I haven't been a regular blog writer this summer, to be sure!  I guess the teacher in me still sees the natural need for a break?  Sounds like a very nicely worded excuse!

Anyway, I was a principal and district office administrator, so I had a fairly conventional vacation schedule (very little :) the last 20 years of my career as a manager.

On the brain disease front, I am still working with our MDS (movement disorder specialist, neurologist) at the medical clinic to get a very specific diagnosis.  I continue to be considered, as I have been for 11 years, as having Parkinson's Plus, with MSA, PSP and CBD all showing symptoms in my case.  (Multiple System Atrophy, Progressive Supranuclear Palsy and Corticobasal Ganglionic Degeneration).

CBD is often referred to as CBS (Corticobasal Syndrome) during life and confirmed as a CBD after death.   CBS is under the umbrella of Parkinson's Plus, and more specifically, one of the Fronto Temporal Dementia's (FTD).  There are several categories under FTD, including PSP, CBS and Primary Progressive Aphasia (predominantly a severe language issue).

In my book, I WILL GO ON: LIVING WITH A MOVEMENT DISORDER, I discussed CBD, MSA and PSP, knowing that I had the potential for being defined has having one of the three.  I didn't know that 8 years after publishing that book that my diagnosis would be possibly redefined-- well that isn't the best way to express it-- further defined. My neurologist way back when said it was "so much more than Parkinson's Disease," and that was in 2006.  He thought that Shy Drager or PSP were likely, and later landed on Shy Drager and more specifically, Striatonigral Degeneration.  Then, in 2012, I had brain surgery and Deep Brain Stimulators were inserted in my brain to block faulty signals causing walking and shaking/jerking issues.

I have had a lot of benefit from the DBS system I have in my brain in two areas and also the generator place in my chest, connected to cables that send the electrical stimulation to the movement center of my brain.  Not many on this earth with Parkinson's Plus have had DBS, so I feel pretty special!

Now, with an outstanding Movement Disorder Specialist working with us, I have had a DAT scan which had very noticeable results confirming that I have a Parkinson's Plus Syndrome.  Now, our MDS  has ordered a PET, which will use radioactive isotope to track metabolism in my brain to determine the type of protein damage I have.  The proteins in MSA (alpha synuclein)  and PSP or CBD (tau) clump (MSA) or tangle (PSP, CBD).  The aggregation of these proteins causes brain degeneration and is incurable and irreversible.  Attempts are being made through research to develop methods that are hoped to recognize these degenerative diseases early and possibly arrest them in their progression, or even just slow them down.  Cures are a long way off, but we are not out of the fight because we care about future generations who could develop the same type of conditions. 

What I have is not genetic and is not communicable.  It is a disease that begins spontaneously or sporadically.  It is possibly caused by toxins in the environment, including workplace or dwelling.  The domino effect of the proteins folding brings about the loss of neurons that provide for the function of the body: everything from blood pressure regulation, breathing control, swallowing, eliminating, eye movements and gross motor function, to name several but not all of the disabling affects. 

I have lost abilities, and will continue to decline, but I am still here and loving this life!  There is so much going on and I have so much hope and enthusiasm for my family, faith and music.  I have so much I want to accomplish each and every day. 

I will post after the PET Scan to share what might be learned about the effects these degenerative processes have brought. I end with a scripture reference that once was the motto of my Christian band I played in with John Moffett and Dale Samuelson, "Changing Heart":

2 Corinthians 4:16-18 New International Version (NIV). Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 
 -- Patient-Online

Off the Cliff: Flood of Emotions While Singing "Give Me Jesus"

The following is an article I wrote for an earlier iteration of this blog on January 27, 2013, after having brain surgery to implant two deep brain stimulation devices in my head, connected to a brain pacemaker located by wires in my upper right chest. I welcome your feedback and responses.

It is hard to describe the feeling I have today.  On Sunday I lost something I have held on to throughout my life, even after Parkinson's Plus entered the picture.  In spite of everything this neurological disease has caused, I have been been able to sing and play on stage.  It is hard to get up and down on the platform at church, and I am not saying that there has been no effect on my musical abilities since I have been diagnosed these past seven years, but I was somehow always able to sing my song and play my own accompaniment, without failing to complete a song in performance.  As a songwriter who performed concerts in my late teens and and twenties, a musician and singer who played in worship bands in churches off and on my entire life up to this day, as a wedding singer who performed as a minstrel singer often performing 4-5 songs during church wedding ceremonies as a side profession for many years, and as an entertainer playing for banquets, schools and churches up through the present, I have never failed to finish a song.  Sunday, it happened.  It was defeating.

I was singing the song, "Give Me Jesus," a traditional, historic song that I was singing and finger picking in a folk style.  a portion of the lyrics read:

Verse 1:
In the morning, when I rise
In the morning, when I rise
In the morning, when I rise
Give me Jesus.

Chorus:
Give me Jesus, Give me Jesus
You can have all of this world
But give me Jesus.

Here I am in 1975 Singing in one of the Many Weddings in which I Performed.

I had sung this and the second verse followed by the chorus and everything had gone well.  Then, as a neurological patient, I came to the third verse, which trigged a weeping spell.  This brought my collapse.

I began the third verse, singing,  "When I come to die..." and as I went to repeat those words two more times as the song calls for, I opened my mouth and squeaked out, "When I come to die..." and at that moment I could barely say the word "die."  My family was sitting in the second row and I realized the cruelty of those words. Having a disease which has an average life expectancy of 7-10 years, made these words sung as my family listened seem sad and cruel.  I began to weep and the more I wept the less I was able to open my mouth and sing the words.  I played the guitar and never stopped playing the accompaniment.  I tried to mouth the words further and after a couple of lines, the choir leader named John, who was behind me, began to softly sing for me, and others joined in.  Soon many were singing the words, as I wept and sobbed, continuing to finger pick my Guild guitar.

At the conclusion of my playing and crying, my wife and caregiver, Karrie, instinctively knew she needed to come up on the platform and guide me down.  I don't walk well, having coordination and balance problems that interfere with my ability to walk.  But more than that, I was an emotional mess, and I needed her comfort.  We hugged in front of a full church which holds about 200.  Others were shedding tears.  My son, Mark, who plays the drums in our band at church, reached out and comforted me, touching my knee.  I was deeply hurt, partly because of the mood these lyrics had brought out of me, and also due to the end of a lifelong ability to always deliver the song that I had never lost, despite my disease.  Now, even that had succumbed to Parkinson's Plus syndrome.  My heart was broken as my family members and my pastor comforted me on the spot.  Pastor Brad indicated compassionately that they had all received a gift as a result of this emotional moment. These words brought assurance that not all had been lost.

I became aware that there is a condition that accompanies Multiple System Atrophy, referred to in one location as "inappropriate laughing or crying."  In other references there is a term used for excessive crying as resulting from Pseudobulbar Affective Disorder and is found in brain diseases such as Parkinson's or conditions resulting from brain injury.  Also, Deep Brain Stimulation surgery has been shown to result in an increase in PBA, a fact that is not lost on me as a DBS patient 6 months in recovery after surgery.

The trigger was the emotion that was induced by the third verse.  The idea of singing about dying in front of my family members altered my professional ability to focus on my song performance. It triggered a never-before-seen lack of ability to block out the crying reaction that I normally control easily while singing and playing my guitar.  As my wife said, once the crying moment began, I was "off the cliff and heading down."  There was no turning back.  This I had never experienced before and it had never happened while I was performing!  Now, it has.  I am dealing with this reality fine several days later, but deep down my heart is broken.  I will never feel that sense of musical strength that I can sing any song and deliver the message in the lyrics for my listeners-- to lift, to encourage and to bless-- I lost that feeling Sunday.  Of course, I can choose my songs carefully and I am not overreacting, but this for me was an important marker.

Will I go on singing?  You bet I will.  I now know that this emotional lability* (see below) was always a possibility and is more so now.  I won't quit singing in public because it is who I am and what I do.  I won't say that the song selection was the problem, because we didn't know based on my history that this would happen.  Now that I know of my potential to go off the cliff emotionally, I will look at each solo with care and be sure it will not be too sensitive a subject to share on stage with my audience.  WE WILL GO ON and that includes singing and performing. -- Patient-Online

* Emotional Lability is defined as: Pseudobulbar affect (PBA), emotional lability, labile affect or emotional incontinence refers to a neurologic disorder characterized by involuntary crying or uncontrollable episodes of crying and/or laughing, or other emotional displays.  PBA occurs secondary to neurologic disease or brain injury.

Author's Note:  I want to add that there was a silver lining in this experience.  The people at Magnolia Presbyterian Church, where we have gone for 10 years this coming July, showed a lot of love with a standing "O" after my song with the broken performance.  There was an outpouring of hugs, words of support and kindness that was shown.  My Pastor told me that he would welcome me to sing again without reservation.  It was a special affirmation, and very much like the church we know-- full of loving people and leaders who care.  Throughout my experience with Parkinson's Plus they have been there for our family and supported me as a musician, as well.  We are always grateful for our Magnolia Church Family!

Michael J Fox Site Post Parkinson's Plus Breakdown

A longtime friend and leader in the Parkinsonism community, Robin Riddle, shared some important news on her email newsletter.   She alerted Parkinson's Plus patients that there was a breakdown of the four main kinds of Atypical Parkinsonism written and posted on the Michael J Fox Foundation for Parkinson's Research website.

Mrs. Riddle, who also writes the Brain Support Network blog, announced this important news through her email list and pointed out that this is the first time such a complete and well defined explanation appears on the MJF website.  This represents for me a change in tone or emphasis in the MJF Parkinson's Foundation scope of interest.  

As one who has from the beginning been diagnosed with Parkinson's Plus, rather than Parkinson's Disease, I have had a hard time relating to the MJF organization, although Michael J Fox has been a great source of leadership and inspiration for me, personally.  The first book I read after realizing my diagnosis was similar to Mr. Fox's was his LUCKY MAN biography.  His honesty and openness about his experience as a front line actor in two very popular TV series and the Back to the Future movie franchise, and his coming forth as a patient diagnosed with P.D., were of great benefit to all who suffer with these degenerative brain diseases.

Robin Riddle CEO and Board of Directors for Brain Support Network

Now, Robin has let us know that there is some quality information posted on the MJF website.  By the way, Robin is the head of the organization known as the Brain Support Network, a group that plays a critical role in research to find answers and eventual cures to these devastating illnesses.   They seek brain donations from patients and their families in order to give this tissue to the Mayo Clinic to be studied, posthumously.  I am thankful for her work and that she and Karrie partnered to arrange for my donation to take place when such a time presents itself.  It is a process which involves some work, some emotional strain and a modicum of expense (a donation determined by the donor and not defined by a fixed amount) to be arranged.  I encourage you to consider doing what we have done because it is a process that will provide answers about the condition you or your loved one suffered from, as well as making a major contribution to the body of work researchers are putting together to find answers and solutions to these diseases.

Thank you, Robin, for being there to share information and leading the way in this important donation process leading to discoveries that will help those who come after us.

I am also grateful to Mr. Fox and the MJF Foundation for Parkinson's Research for making this educational information about Parkinson's Plus a priority on your website.  It means a lot to me and I am sure to others, as well.

Blessings, Patient-Online

The Blues Won't Let Me Go!

This is not a bummer, but rather a good thing.  The blues are a music style/genre that I have grown to love and enjoy since I decided in 2009 to make a goal of growing in my knowledge of and skills in writing, singing and playing the blues.  This includes the guitar and the mandolin, along with the vocal style.

My alternative blog is, My Blue Strat, and I am posting below my newest journal entry on that blog.  Follow this link to learn about my love for the blues and why I find this form of music a positive source of energy and expression.

http://mybluestrat.blogspot.com/2017/05/the-blues-wont-let-me-go.html

Time to Let it Sink in: Coriticobasal Syndrome

I took some time.  All of April to be exact, and then some.  Here it is May and I am thawing out my writing impetus after 5 weeks of writer's block.  After getting a new (November 2016) probable diagnosis of a disorder called Corticobasal Syndrome, a member of the Fronto Temporal Disorder family, I ran out of words to say, or write.

First, of all, I am very grateful to our great doctors-- our primary care doctor at the clinic, the various specialists who treat me for everything from choking/swallowing difficulty to severe eye pain, and up to and including the outstanding Movement Disorder Specialist/Neurologist that is working so hard to  find answers to my rare Parkinsonian disorder.

For years, I wrote on this blog (since 2006 with some breaks) details of my experiences, feelings, faith struggles, spiritual plateaus, and thorough verbal descriptions that defined and categorized all of the various Parkinson's Plus syndromes that I am similar to, if not experiencing.

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. -- Galatians 6:9

Now, after all these years, I am at peace.  I have for years been defined as having Parkinsonism and one of the Parkinson's Plus syndromes, most likely Shy Drager. Shy Drager is known as Multiple System Atrophy and I have the hallmark symptom, low blood pressure upon rising from bed or getting up from a sitting posture.  This causes blacking our, loss of oxygen to the head and can be an hours-long condition where my neck and shoulders ache, my arms and upper extremities get a numbness and lack of feeling, and my strength is very limited, causing great fatigue.  This blood pressure issue gives pause to my neurologist and is the reason why in addition to Coricobasal Syndrome (Alien hand and Eye control/focusing/tracking issues) and Parkinsonism (tremors, stiffness, loss of balance, and many other symptoms), I am considered to possibly still have MSA.

My behavior, emotions, thought changes-- an area so personal to me that I can't discuss yet-- means that I am being looked at for Fronto Temporal issues.  FTD is scary.  I don't know what to think about it.  If I am confusing you, just imagine how confused I am.

All I can say is, I am beginning to want to share about these things.  I respect my physicians and want to give them the space and freedom to consider all the avenues and pursue the best truth that describes the need and leads to the best possible treatments.  My Deep Brain Stimulator is working for me and keeps me walking-- at least enough to use my walker.

Today, Karrie is taking me on a very nice outing to Ikea.  That sounds like a lot of fun.  This will require my wheelchair and mean that I will be dodging nice people all day long. It will be great to be out and part of the world for a time.  Just enough time to let it sink in again-- I may be disabled, but I am not grounded.  Not completely.  I have Coricobasal Syndrome:  a loss of cells in my basal ganglia on both sides enough to show up in my DaT scan results and cause the loss of body control that has put me in a walker and stollen my career.

After all this time, I don't have as much to say.  However, I am beginning to want to share again.  I will give it a try, very soon.  Meanwhile, I've got so much to do. I'm a father, a husband, a grandpa and a guitar player!  Life is beautiful, man! Stay tuned-- Patient-Online

Health Care Vote Risks Health and Security of Disabled

Simply "repeal and replace". How simple.  How easily that rolls off the tongue.  Unfortunately, it reveals the insincerity of the purpose of the American Health Care Act (Current repeal and replace health bill in the house).  The President demonstrates over and over how little he understands the Affordable Care Act and the people who benefit from it.  He has never lived in the the trenches of every day life and has no knowledge what health care does for disabled people such as myself. This is the same man that mimicked a person with postures of limbs and movements somewhat like my own.  It is one thing to insult a sick man: it is another to presume to take the insurance coverage from a disabled man and his wife.

What is the Affordable Care Act?  While not literally defining or describing the details of the ACA, I am referring to the general nature of what is called Obama Care.  Obama Care was a first step toward making health insurance more affordable and more accessible.  It is a very important step in that direction, but it was hampered by changes suggested by conservatives and insisted upon by their members.  Though they gave that input and prevented this law from going as far as it needed to in providing better health care at a reduced cost, it was passed by the democrats with virtually no affirmative votes by GOP members.

The Affordable Care act is not health care.  It is a law which provides rules to govern health insurance and puts constraints on insurance companies that prevent them from providing too little coverage for the money spent by the consumer.  The ACA made sure women were able to have annual well care visits and mammograms, including labs, at no cost (provided by health insurance paid for by the consumer).

My wife, who cares for me as a permanently disabled person with a degenerative brain disease, lost access to health coverage when I was declared 100% disabled.  She has been forced to buy private insurance out of her pocket for the last 10 years.  She knows what the exchanges are about better than 90% of the politicians who speaks so negatively about them.  The Affordable Care Act is not in a death spiral--that is a marketing statement made up by politicians to plant the seeds of fear and doubt in the minds of everyday Americans. The Affordable Care Act is simply not a perfect law because it is not a single payer medical program that covers every American.  Obama care is a market-driven, pro-business health insurance law that requires insurance companies to give their customers something for their money.  It keeps them from denying coverage for Americans like my spouse who has conditions that they could deny her coverage for if she wanted to choose another vendor to buy from.  Women can't be charged more than their same age counterparts, as was historically customary.  It removed life-time caps on dollars spent per person that would cause financial crisis for seriously ill individuals with heart disease, diabetes, cancer or brain disorders such as mine.

"Repeal and Replace" gives the appearance of making Trumps' promises about health care come to pass. The truth is, he also said all people would have access to a lower cost, better product that gave each American better medical care.  The American Health Care Act (the Repeal and Replace bill) does not accomplish anything near that.  By their own admission, Republican members are asking their colleagues to first pass this bill, and then it would require a second and third bill to come forth to fix the problems it causes when implemented!

My coverage through Medicare is something I can count on.  This new legislation would increase my costs dramatically, I am told.   I am enrolled in a Medicare Advantage Plan that was put in place by President Bush and has been a very successful program.  This "repeal and replace" health care legislation threatens to undo that success from the Bush Presidency that was strengthened and continued by the Obama administration.

President Trump doesn't seem to understand what "repeal and replace" means.  He simply likes winning.  Winning for him means a big loss for regular people who have to actually pay for medical care that could cause a great financial loss.  We are very nervous.  But then, a man who makes fun of disabled people wouldn't probably understand that issue.  I mean that literally, not as a cheap shot.

Urge your congress person to vote "No" on this American Health Care Act. As always, I welcome your input and responses. -- Patient-Online

My wife deserves health care despite the loss of my career
and benefits due to a health crisis in my life. 

Inspiring Story of Missouri Tornado and Friends Rescuing Parents

My wife's mother, Mrs. Mary Lou Hynick, wrote a wonderful account of her and her husband Jim's experience during and after a tornado in Missouri.  Mr. and Mrs. Hynick (Dad and Mom!) live in the Ozarks in a hilly area near a large lake.  An unexpected tornado did hit hard just over a week ago, and in the aftermath, Jim's fellow firefighter's arrived in a surprise visit to bring relief.  This great story is used by permission from my Mother-in-Law, Mary Lou.  

"Monday evening we were watching TV and the show "Scorpion" was

interrupted with weather news.  We were in a tornado watch.  There was

a very large storm that was as far north as Nebraska, maybe further,

and went down into Arkansas and Oklahoma.  It was also very wide, with

lots of heavy wind cells and hail cells.  It was traveling at +/- 45

miles an hour, and going from south west to north east.  At about 9:30

the electricity went off and of course I was putting up candles and

getting the flashlights. The electricity was off for about 20 hours.

Shortly we could hear wind, loud, louder, and louder still.  So loud

you couldn't believe how loud.  We went to the basement and we were

there for about 40 minutes.  Lighting started and lit up the sky to a

completely white sky, no dark any where.  White with whiter bursts,

and this went on for about 25 minutes before we could see any dark at

all.  After about 40 minutes Jim went up and went outside, it was

raining.  And he told me we had quite a mess.

I looked out and there were shingles everywhere.  Our basketball stand

which had 200+ lbs. of sand in the base had been lifted up and moved

over to the deck and was on it's side.  Our BBQ, which is large was

covered and had been strapped to the deck rail.  It was on the other

side of the deck on it's side. Everything on the deck was moved from

the south side to the north side. We have a large umbrella with a base

that has 300 lbs. of sand + water-- it was up and lying on the deck

rail. Our propane deck heater is broken, but other than little things I

don't think much is broken.  Most of it is wrought iron or similar.

But a mess.

We have shutters off, but can be put back on.  Our house numbers have

vanished, some small things and some very large things are just gone.

We will have to have a new roof.  That seemed to take the largest

part of the damage.  One roofing company said they will come out and

give an estimate and our date is March 20 at 4:00 P.M.  No one else

has even called back.

Our neighbors up on the hill from us lost their siding, roof and

windows.  One has tree in his bedroom; one of our friends has broken

windows.  We are very blessed; we just need a roof . . . and then we

had help arrive.  The deputy fire chief, Ron Anselmo, came with a crew

of six and an Engine (engines contain roof ladders).  They spent three hours

covering our roof and putting shingles that were good on to help us

until we can get a new one. Our time with the department was paid back

in one afternoon.  I couldn't believe my eyes.  Our neighbors were

wondering what was going on: three fire department vehicles, two private

trucks and a whole lot of man power.  Our Lord answers prays that

haven't been sent yet!!!

We are both fine. We were not afraid-- I wrapped up in a blanket with

Jim beside me on the steps in the basement. We watched the lightning

from my craft room window and commented about it that it never let up

at all, just white and whiter, no dark sky at all.  I am amazed we

didn't get a lightning strike.

We have been told we would not ever have a tornado here as it is too

hilly.  Well, that isn't so.  But they don't happen often, so now we

know we may have to go to the basement if the weather isn't good.

We just thought you should know.  We know you watch the weather,

Laurie is seldom listed.  It was on the news about Mack's Creek, but

not Laurie. -- Love, Mom"

Thanks, Mom! We shared your story for two reasons:

1) It is so inspirational to read about the generosity of a community of people in our United States providing genuine support and help to dear friends, without their asking. 

2)  Mom is a great writer and she wrote a heart-warming and uplifting account in a wonderfully well-stated narrative.  We enjoyed it and thank you for sharing your writing talent! --Dan and Karrie

As always, I welcome your thoughts and responses. -- Patient-Online

Confusion Over Parkinson's Contrasted with CBS and MSA

This is Multiple System Atrophy Awareness month!

Go to MSA Coalition Page for More Info

I have quite often discussed with some of you in the family, and various friends, about the difference between Parkinson's Disease and the Atypical Parkinsonian disorders.  I am going to give you a few points to chew on, knowing you are the best ambassadors we have for spreading the word about these rarer forms of Parkinsonism.

Parkinsonism is a condition in which signs and symptoms of Parkinson's appear in the patient's disease.  Even though the person may not have Parkinson's Disease, they have a brain disorder that causes similarly appearing symptoms, including tremors, balance problems, stiffness, walking difficulty and cognitive changes.

Parkinsonism appears with Parkinson's Plus syndromes such as Multiple System Atrophy, Corticobasal Syndrome and Progressive Supranuclear Palsy.  Since I was first diagnosed in 2006, the neurologist I saw for ten years thought that my condition was one of these three.  As time went on, Multiple System Atrophy became the most likely.  All three of these conditions are determined to be "probable" in life, and are confirmed after death through a brain tissue study.

Even though I have  Parkinsonism it is not Parkinson's Disease in the simplest form because the disease process in my brain is more involved than in Parkinson's.  I have Corticobasal Syndrome (CBS), and it is uncertain if it would be alternatively considered Multiple System Atrophy (MSA).  These have overlapping symptoms and are best described as rarer forms of Parkinson's.

Has much changed?  Not really, except I have more clarity and certainty of the degenerative brain disease that has taken so much from our lives in the Brooks family.  We are fortunate to have this increased clarity because the neurologist I have been seeing of late is a Movement Disorder specialist, which is a doctor of Neurology who specializes in all things Parkinson's and Parkinson's-like.   She saw a clear indication in the results of my DaT Scan which demonstrated that I have Parkinson's Plus, not simply Parkinson's Disease.

Parkinson's Plus has long been the understanding of my condition.  I wrote about this in my book, I WILL GO ON: LIVING WITH A MOVEMENT DISORDER.  The confusion arises because the word "Parkinson's" appears in both descriptions of the diseases.  Technically, they are different in that Parkinson's Plus is a faster progressing disease and causes more disability sooner.

That is why I was unable to continue driving and had to retire at 51.  I have difficulty walking with coordination and I struggle with choking on food and liquids.  I also have digestive, urinary, heart rate, blood pressure regulation and body temperature issues.  These are not visible to friends and family so what appears to be a better day, could be a day I am having trouble with my blood pressure or having great difficulty coughing after drinking liquids.

I also have very abnormal horizontal eye movements which are caused by a loss of neurons in the area of the brain that controls eye movement.  At times I see double as a result. 

I am so glad that you are interested and are trying to grow in your knowledge.  MSA is a disease I have been identified with for 10 years or more.  I have CBS, but if it were to turn out to be MSA at some point, that would be a very similar prognosis. My greatest concerns are pneumonia, breathing constriction, and urinary infections.  I do not have idiopathic Parkinson's, but I do have a form of Parkinsonism, and much of the research being done for P.D. will have a benefit and weight heavily on the potential for discoveries that relate to PSP, MSA and CBS syndromes.  I will always identify with my fellow patients who have Parkinson's Disease, and the support groups for Parkinson's are virtually the only in person, brick and mortar groups we can attend anywhere near the Riverside, CA area. As always, thanks for reading! -- Patient-Online

DaT Scan Results on the Heels of the Loss of Our Dear Mother

It has been a trying couple of weeks, but the sun shines behind the clouds, and it is breaking through. Losing my mother, Marguerite, is devastating and creates a void no one can fill.  However, her passing also makes crystal clear the beautiful life she lived, her several talents and the way her life lives on through each of us who were her family and were close to her.  I feel her with me more than ever, in my personality, abilities, and zest for life.

While this great loss was impacting our family, Karrie and I were going through another battle.  We have been fighting my disease by seeing an excellent specialist, a Neurologist specializing in Movement Disorders at Loma Linda University Medical Center.  I won't list the physician's name to protect her professional privacy but I would shout it from the rooftops otherwise! A wonderful doctor, indeed!

Over the 5 or 6 visits we have had with her, we have had very thorough conversations and examinations as she gathered clinical information about my 11 year history with a parkinsonian syndrome.  She approached it using scientific methods, which included starting from scratch with our story and her physical tests.  She spent 2 hours with us initially and has had at least three other doctors examine me while in her offices, as well.  She has adjusted my medications and also my Deep Brain Stimulation system generator each time I have seen her over a 5 month period.

Her actions have included giving me a memory medication called Namenda and it has helped with clarity of thought and provided for more peaceful nights of rest.  Also, she has sent me to an Ear Nose and Throat specialist to study my speech delays and swallow/choking issues. He put a scope up and down through my nose to view my vocal chords with a camera.  My breathing is compromised by my vocal cords which tend to close part way as I breath, causing stridor.  I am now getting speech therapy to help with both speech and swallowing, and I am going to pay more careful attention to my breathing now and in the future.

The decision she made to send me for a DaT scan was really key to breaking the log jam, to my eyes.    I had the scan the week after my Mother's services.  It was hard to be in the same facility in which she was last alive the week before, but the importance of this nuclear imaging test was worth this emotional reminder for Karrie and me.  I felt that Mom was present in my heart and mind while we were undergoing this DaT process.

A DaT is a study of the "Dopamine Transporter" to determine if neurons located in the Basal Ganglia responsible for the transport of dopamine have been lost.  I received an injection of Loflupane I 123 and this nuclear substance attaches itself to the remaining neuron cells.  During the scan, a Gama Camera detects this substance and shows a lighted area where the dopamine transport neurons remain intact.  If there is a loss or reduction in the normal shape, that of a semi-colon according to my Movement Disorder Doctor, then this indicates either Parkinson's or an Atypical Parkinsonian disorder.  Generally, the pattern would be lost unevenly on one side in Parkinson's and would show up with more uniformity on both sides in a Parkinson's Plus syndrome. My reference for this information about the DaT process is the following article found at this link: http://www.parkinson.org/find-help/blogs/whats-hot/april-2014 )

I have borrowed an example image to give the reader an idea of what it looks like in the normal versus the abnormal states of the basal ganglia:

Our Doctor studied my results and showed them to Karrie and me.  We were able to see examples which showed the dot of the semi colon without the comma.  The round portion is the Caudit and the tail, or comma, the Putamen.  In my images, there was little visibility of the Putamen.  The images showing the significantly reduced Putamen were very symmetrical.  The beauty of this is that our Doctor found that this scan affirmed (I didn't use the word confirmed for a reason, affirmed to me means "supported?") her clinical findings (observed phenomena), using the these results which were consisted with what she sees trending in my visits.  I do not have Parkinson's Disease.  I have a Parkinson's Plus condition which is most like Corticobasal Syndrome (CBS).   It is somewhat like MSA.

Corticobasal Syndrome is in the family of Frontotemporal Dementia.  There are four subtypes, with one being focused on a movement disorder that has some movement problems that appear similarly to Parkinson's, but also includes additional problems which makes the prognosis worse and the average time leading to death is typically shorter, on average.  Our Doctor continues to work on my case, but sees it as CBS, and within the FTD family.  Either CBS or MSA have to be confirmed through a study of brain tissue.   Until then, the parkinsonisms are diagnosed as a "probable" and confirmed post humorously if the patient and family choose that path.

You will hear me refer to my diagnosis as Corticobasal Syndrome for the foreseeable future.  I will not be referring to my condition as Parkinson's Disease, since my not having typical PD has been the consensus view of several doctors, including our long term 10 year (now retired) Neurologist and up to and including our Movement Disorder Specialist we have been seeing for 5 months.

As I began, I reflected on these challenges arising along with the changes that come from the passing from this life to the next of our Mother.  Mother was supportive and compassionate.  Her beautiful life puts this in perspective and gives me reason to be so thankful for each hour, day, week, month and year.  Like Mom, I will continue to push forward learning and living with all the love for family and those experiences that I can find within the confinement of my disabilities.  What a beautiful life we have been given, and losing my mother gives me even greater reason to give thanks to God for all that we have and enjoy.

Thanks for caring and for reading.  --Patient-Online

My Mother's Passing: a Bit of Her Story

Mom - a Candid Moment with our Granddaughter

Today I would like to share some of the important or interesting details about the life of my mother, Marguerite Ada Moyers, who became Brooks later.  Our mother, Marguerite Ada Brooks, was born in 1932, in Los Angeles, California. Her father was Eugene Moyers, who was born in 1891, a certified public accountant and a World War I wounded US Army veteran. Eugene married our grandmother, Maude Eva Barnhart, after meeting her in a Los Angeles music store, where they both were working at the time. Mother experienced frequent moves with her family around the United States, including Washington D.C. for a period of my mother’s younger years, time spent in Utah during World War II, and many other years in San Diego. Mom had a strong bond with her brothers, Gilbert and Thomas and is survived by her lovely sisters, Elizabeth LeSage and Virginia Beckett (aunts Betty and Ginny!).  

Marguerite grew up enjoying music, particularly. She enjoyed singing and eventually took voice in order to learn arias from various operas. As a girl, she was an avid reader, and loved the public library where she would sign up for summer reading programs.  She was excellent at sewing and school work, developing strong organizational skills. She took piano lessons as a girl, loved playing with friends and was a fan of the old radio drama programs that preceded the availability of television. As a high school student she needed to help the family make ends meet, so she moved in with a family and served as a nanny and tutor for three children.

After graduating from Long Beach Poly High School, Mom worked and started City College. Eventually, she met Ronald Brooks through his sister, Janice. After Ron returned from a four year stint in the Navy during the Korean War, Mom and Dad married in 1951. 

Mother finished college, but did so after raising four children, with the oldest being Teri Ann, born in 1953, the youngest Casey Andrew, born in 1970, and the middle sons Daniel Ryan in 1955 and Matthew Charles, who was born in 1962. 

Mother’s father, Eugene, passed away in 1965 and he was given a 21 gun salute. Her mother, Maude, passed away in 2001 at the age of 97 years. Marguerite, like her brothers and sisters, was devoted to her mother Maude and spent much time with her on weekends in San Diego during the late 1990’s. Maude was a devoted Christian and practiced regular Bible reading and prayer. She wrote insightful letters regularly to all of her family and thus inspired many. 

For over 55 years, Mother remained in the Lakewood, California family home she and Ron had raised their family in.  During the last five years she has resided in Beaumont, buying her dream retirement house in those recent times. Going back to the Lakewood house, the family room was an addition, with a step down and a big, used brick fireplace. The builder of this inviting family room was our step-grandfather, Ralph Flory, whom passed on in 1989, and Marguerite always treasured her relationship with her step-father, Ralph. 

Mom went on to receive her Associate in Arts degree from Long Beach City College her Bachelor’s in Science from California State University, Long Beach, and her Master’s in Science in Counseling also from Long Beach State. She continued on until she studied and did her practicum hours to receive a  credential from the State of California as a School Psychologist. Mother’s 30 plus year career in the public schools included serving as a School Counselor in Long Beach and over 20 years as a Psychologist in the Garden Grove USD. 

Mom was one who showed the way for her children, always encouraging us to pursue educational pathways that would open secure doors and provide a solid foundation under our feet.  Mom did this by guiding us, but most importantly, by her own actions.  We would walk the halls of learning where she had walked before us, literally going to her schools and following through on the path she carved.

Her favorite things were traveling with her sister Betty and staying in hotels together.  They regularly met up with Ginny and Ron, enjoying their visits in Yuma together.  She loved having season tickets for theatre and orchestra, and she had many friends over the years with which she enjoyed these pursuits.  

Mom loved meeting with friends and family over a meal.  She tried to never miss the graduation, wedding or award ceremony for her children, grandchildren and nieces and nephews.  Mom loved her extended family and valued reunions, the last of which we had right after her 80th birthday when many from the Moyers clan attended a large gathering in the Yucaipa Regional Park. 

Mom was active at Lakewood (Grace) First Presbyterian Church as a Deacon and a long time choir member.  She traveled to Europe and Russia with the choir many years ago.  Here lifetime travels included Ireland, the Panama Canal and  other European destinations. 

Over the years she belong to the School Psychologist’s Association and School Counselor’s organization.  After moving to Beaumont, she joined the Republican Women’s association, the Redlands Woman’s League (volunteered in their Thrift Store), was part of the University Women’s group for Redlands University and enjoyed the social life found in activities and outings at Solera community in Beaumont. 

Mom never stopped.  She always had more plans to go  and do and see.  She encouraged every one she knew to do the same and loved her large family of four children, 10 grandchildren, 7 great grandchildren and 1 great-great grandchild. 

Mom was a deeply spiritual person who had a great and abiding faith in Christ.   She was a giving person and loved all in her own family and the extended family of relatives that she was so proud of.  Her sweet smile and eager conversation will be missed always. -- Patient-Online

DAT Scan Procedure in Parkinson's Plus

I am so grateful that we were able to gain approval for a DAT scan that I underwent yesterday. After eleven years, I think we are closing in on the most specific information regarding the degenerative brain disease that has changed my life so drastically.

A DAT scan is a nuclear study that allows images that show the areas of my brain that are being affected and causing the progressive disabilities that I suffer. It is as high tech as is available today.  I had an IV injection with a low degree of radiation that would be viewed as it moves through my brain.

Next week I will return to the Movement Disorder Specialist and learn what the findings of this study conducted at Loma Linda University Hospital indicate.  I will then share here on my blog what I can on that front. Thanks for your interest! -- Patient-Online

Song: Through Your Eyes - World Looks Different with PD Plus

We lost our mother, Marguerite, suddenly, a week ago today.  She was an amazing 84 and still going strong.

If you watch on You Tube, you know you can click the CC (closed caption symbol) in the margin at the bottom of player, and you will be able to read the lyrics I have written in this song.  -- Patient-Online

Meeting Dad with PD from Davis Phinney's Daughter

Thanks to my local support group leader, Zack Earp, I ran across an excellent article about meeting someone with Parkinson's.  In "Preparing People to Meet Someone with Parkinson's," Davis Phinney's daughter highlights some important visual symptoms to understand.  Kelsey Phinney explains that in addition to the expected tremors that a majority of patients display, though not all PD sufferers have tremors, there are facial expression, balance, stiffness, and communication issues to be aware of.  Kelsey is a neuroscience graduate who wants to help the broader community understand that by preparing people to meet a Parkinson's patient, they may be able to get past some of the visual distractions and see the individual as more than their brain disease outcomes.

It is important to understand that ideas may not be as fast to emerge in a conversation, though your friend or loved one with PD may have some great stories to tell as an individual who once possessed a very expressive personality.  The facial mask and delay in getting words to be formed in a discernible syntax are issues that may put off they listener, therefore it is worth knowing what to expect in order to appreciate that the Parkinson's patient is not defined by their disease, but is the person inside the body struggling with odd-looking movements or lack of facial expression.

My final point is that in addition to physical movements, postures of limbs and facial expressions, there are bodily functions of digestion, heart rate, swallowing, breathing and urinary systems, to name several, but not all of the issues.  These additional symptoms are autonomic in nature and  would generally be found in this degenerative brain disease.

Some days are better than others, but I appreciate the points Kelsey has made,  if you take a few moments to read this article it will equip you with some great suggestions in preparing distant relatives and/or friends to meet your loved one with Parkinson's or a Parkinsonism-plus condition such as mine.  -- Patient-Online

Artwork with Climbing Theme by Stephen Brooks

Habakkuk 3:19 

"The Sovereign Lord is my strength; he makes my feet like the feet of a deer, he enables me to tread on the heights."

I am so proud to display my new header art work.  My son Stephen is a professional artist with a bachelor's degree from California State University in Fine Arts.  He is also a full-time substitute teacher who serves in the San Luis Obispo community in public schools, K-12 grades. Formerly, he taught in Riverside County public schools districts.  His serious interests include rock climbing on the mountains and peaks of the western United States, along with biking, running and camping.  He designs, draws and sells art on the internet that represents his love of the mountains and his climbing pursuits.

Stephen was raised camping and hiking with his family on annual vacations in the southland (Not that I take credit for the rock climbing-- I am terrified of those kinds of heights!).  Mt. Palomar State Park and Joshua Tree National Park fill a special place in his heart.  In addition, he grew up beneath Box Springs Mountain in Moreno Valley, California and has had many adventures roaming its peaks that shadowed our house.

I asked Stephen to use the concept of a long hike, an arduous climb, the pursuit of heights beyond our ability to act, as a metaphor of the struggle that journeying with Parkinsonism-Plus brings.  Those with Atypical Parkinsonian diseases and idiopathic Parkinson's know that strength, fitness of mind and body, courage, faith and stamina are all required resources to take on the "trip".  Reaching the top, overcoming to make the most of life with a neurodegenerative brain disease, is possible with these attributes, and the love and support of loved ones and friends.

Stephen's design, drawing, composition and color scheme all came out of this theme and are represented in his original and exceptional header print that I am honored to post permanently on the top of my webpages.  I hope that you enjoy it!  Great job son!

To see Stephen's work and various professional pieces that he markets on the web, go to:

Hem and Haw - Artwork by Stephen Brooks

For CLIMBING online magazine interview with Stephen Brooks and his artwork featured (see no. 5), visit:

Eight Climbing Artists You Should Know -- Stephen #5

Please give us your feedback and let us know if you like our new design! -- Patient-Online

Pastor's Early Influence Goes On Years Later

If you have known me long, or read my book, I Will Go On: Living with a Movement Disorder, you may recall me telling stories about a man named, Jay Bartow.  Jay was my earliest minister in my home church, Lakewood First Presbyterian Church.  Pastor Jay, as we affectionately called him, was the most influential friend and Pastor I can remember in my development as I transitioned from high school to early adult.  Jay led me to understand a deeper walk with God in Christ and taught me so many things about life.  He shares a number of my most important interests, including the writings of C.S. Lewis, camping, trout fishing, social justice, sports and, of course, Christian life.  

I am so grateful to Jay and his wife Gail for being there for me and all of my friends in our youth group in Long Beach.  We were fortunate and thrilled to have a special visit in our home with the Bartows last week.  It was a time of sharing, laughter and prayer.  

Subsequent to their visit, Pastor Jay preached a sermon as the retired Pastor of his church where he served for 40 years.  I am posting it here, in hopes you will read it and gain some insight to the blessing Jay was to me and my whole family.  My boys know camping, fishing, a Christian upbringing and many different values that we had in our home while they were growing up due to Jay's influence in my life.  Thank you to Rev. Jay Bartow for allowing me to share his sermon in this written form!
 -- Patient-Online

First Presbyterian Church of Monterey, CA

Light into a Darkened World

Jan. 15, 2017

Jay Bartow, Pastor Emeritus

First Presbyterian Church of Monterey, California

Texts: Isaiah 49:1-7; John 1:29-42

Every now and then we ask or are asked a question that literally changes our life.  Can you remember the day you asked or were asked, “Will you marry me?”  I can.  And the “yes” that I heard changed my life for good. I mean that literally. A cascade of good things have flowed into my life since that day.  We just celebrated fifty years of marriage and cherish my life with Gail more each day.

Another question that changed my life was asked of me in the Student Union at UCLA in September of 1962.  A fellow student asked if I would take a short survey of questions, and my car pool ride hadn’t arrived yet so I said, “Okay.”  At the close of the survey he thanked me for my time and asked one final question which I think I can remember verbatim: “Eighty five per cent of the collegians who have taken this survey have indicated a desire to deepen their spiritual life. Would you count yourself among them?”  I didn’t think too long about it before I said, “Yes.”

From that response came an invitation to meet again after reading a magazine that this student presented to me.  The magazine was a compilation of testimonies of collegians who had found meaning in their life through a relationship with Jesus Christ.  As I met with my new friend, John, the next Friday, we continued our conversation and he asked if I would like to read the Gospels with him. Since I had never read the Bible I thought it a good idea for me to become acquainted with this literature that has been so influential to the development of our civilization.

I was captivated when I began to read the words and ways of Jesus. I entered college an idealistic agnostic with a major International Relations, hoping to become a diplomat and to work for a more just and peaceful world. What Jesus said and did spoke so profoundly to the dilemmas facing our world that I came to conclude that his person and message was the best curriculum I could study in the pursuit of my goal.

Today’s text from John describes two incidents in which John the Baptizer speaks to his disciples about Jesus.  In verses 26-27 of John 1 we hear John say, “I baptize with water. Among you stands one whom you do not know, the one who is coming after me; I am not worthy to untie his sandal.”

The next day John sees Jesus coming and says, “Here is the Lamb of God who takes away the sin of the world. This is he of whom I said, ‘After me comes a man who ranks ahead of me because he was before me.’ I myself did not know him; but I came baptizing with water for this reason, that he might be revealed to Israel.”

That mysterious phrase, Lamb of God, is found nowhere else in the Bible. John is unique in using it, and de does so twice. Scholars have debated the possible meaning of the phrase, but I agree with the majority who believe it is a reference to the Passover sacrifice of a lamb each year during the most important holy day for the Jews. The sacrifice was offered to atone for the sins of the people.

Lambs are not particularly noble or powerful animals, but Israel was instructed to offer lambs without blemish in payment for their sins.  The fascinating thing to note here is that John does not limit the efficacy of the sacrifice to the Jewish people, but says the Lamb of God takes away the sin of the world. 

That phrase has been tumbling in my mind for the ten days since I gladly accepted my pastor’s invitation to preach this weekend as he and pastor Katie are at Calvin Crest with many others from our church. 

The sin of the world! Wow! That boggles my mind. That is a weight beyond computing. Even a cursory knowledge of history shows us a sad chronicle of violence, prejudice, malice and mayhem that brings a sensitive soul to tears.

I remember lying in bed one morning and my father lying down next to me to share one of those tender moments that lend such strength to children. I asked him, a veteran of World War II in the Pacific Theater, “Dad, why are there wars?” He didn’t have a ready answer, but as we pondered this painful question I sensed that he shared with me a desire to work to end war, and that no doubt was one of the seeds that led me to want to be a diplomat.

The Greek word translate “sin” which John uses is hamartia and is a term used in archery having to do with missing the mark.  When Jesus was asked which commandment was the first of all he replied: “You shall love the Lord your God with all your heart, and with all your soul, and with all your mind, and with all your strength. And the second is this, ‘You shall love your neighbor as yourself.’ There is no commandment greater than these.” (Mark 12:29-30)  That is the succinct definition of the target or goal of living. 

Any honest person has to admit that he or she does not always hit that target, and when we look at history we see the misses writ large.  God sends Jesus to wipe away our misses and to redirect our lives in ways that reflect love of God and neighbor.

When two of John’s disciples approach Jesus, curious to learn more about this mysterious figure who is God’s Lamb, Jesus asks them, “What are you looking for?” They reply, “Rabbi, where are you staying?” A question followed by a question, but the upshot is they want to be with Jesus, they want to hang out with him. And he graciously says, “Come and see.”  And that changed their lives and changed the life of the world, because those first followers reached out to others who in turn reached out to others and so on down through the centuries to where you and I connected with this same drama.  

Who is this mysterious figure Jesus of Nazareth? How could he possibly take away the sin of the world?  Come and see. Apprentice yourself to him. Take him up on his offer which my friend Eugene Peterson so beautifully translates from Matthew 11:28-30.  “Are you tired? Worn out? Burned out on religion? Come to me. Get away with me and you’ll recover your life. I’ll show you how to take a real rest. Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won’t lay anything heavy or ill-fitting on you. Keep company with me and you’ll learn to live freely and lightly.” (Mt. 11:28-30 The Message)

How does that sound to you? It sounds like a great offer to me: learn the unforced rhythms of grace, learn to live freely and lightly. And since I first apprenticed myself to Jesus I have found no small measure of truth to that offer. His grace has enabled me to relax inside my own skin to a degree greater than I could have on my own. His forgiveness has freed me to do and dare in the confidence that if I stumble and fail he is ready to pick me up, help me dust myself off, and try again.

You ask, how does one hang out with Jesus since he is not physically present on earth? It is true that he is not present as he was those brief years in Palestine, but he promised to baptize his followers with his Spirit, to come again to them after he physically departed. And when you find yourself reaching out to others in love, giving of yourself and substance because you want to and not because you have to, you begin to realize that his Spirit is at work in you and in the world.  

Paul also reminds us that his followers are the body of Christ, and individually members of it (1 Cor. 12:27).  We see evidence of Christ at work in the world through his followers. Many of the world’s finest universities and hospitals were begun and sustained by ardent followers of Jesus: Harvard, Yale, Princeton, Columbia Presbyterian Medical Center to name just a few of hundreds of institutions inspired by the person and message of Jesus. 

Many of the best schools and hospitals in Africa. Latin America and Asia and Oceania, were likewise begun out of similar impulse.  This Friday I fly with a team of eleven others to Cuba to help install a water purification system and do health and hygiene education in a church in the eastern part of the island near Santiago. Every time I go on a trip like this I meet dedicated followers of Jesus who volunteer their time to learn how to build and run these systems and to educate their communities in proper hygiene and use of this water.  We work together with energy, enthusiasm, imagination and love.  And when children and parents no longer get sick by drinking unsafe water we thank God for the work we accomplished as partners.

The world-wide nature of the church has always inspired me and confirmed to me that the power of the good news is truly saving across all manner of cultural and linguistic barriers.

The passage we read from Isaiah 49 makes clear that God has a greater task for his servants than simply to restore the fortunes of their own nation. God proposes to make them a light to the nations that God’s salvation reach to the ends of the earth.  This world-wide calling and vision for God’s people was a new idea. Up till then each nation and cultural group had its distinctive deities who were primarily concerned with the welfare of their group, and not the world at large. Often they saw their deities and opposed to others whom they saw as enemies. 

Judaism and Christianity, which grew out of it, believe in a God who desires that the whole world experience God’s Shalom, a word that means harmony and wholeness and fullness of life. Salvation is not just a ticket to another world when we die, it is entry into fullness of life here and now and forever more. That is why schools and hospitals and proper nutrition and potable water and honest and just governance have always been part of the mission of Christ’s followers.

Many of you may not have the inclination or opportunity to go abroad to share in the work of Christ, though you certainly facilitate it through your gifts and prayers. But think of your world, your family and friends and co-workers and neighbors.  All of us know persons who are battling darkness and doubt and fear and grief. How can be bring and be light to them? A card, a visit, a shared meal. Simply being present and listening to others attentively and with kindness channels hope and light to them. If you have been on the receiving end of such kindness you know this to be true.

Last week Gail and I visited family and friends in Southern California, and one visit in particular warmed my heart. My first call was to a church in Long Beach where I was pastor to students. Early on I visited several high schools to meet students on their own turf. One afternoon after school I met a young man named Dan Brooks who was practicing free throws, and we struck up a conversation as we shot baskets. It turned out that he sporadically attended the church where I worked and I invited him to our high school group which was just about to begin a weekly Bible discussion group. 

He was one of the first four to come, and the message of Christ connected with him and he began to invite others, and soon we had thirty-five students coming and seeing, to borrow the language of John’s Gospel. And what they saw was the Spirit of Christ bringing hope and purpose and life to their fellow students.  

Four and half years later I was called here to Monterey, but in the intervening years good things were happening in Dan’s life and the lives of many others in that group. He worked as a youth pastor for a while and then as a public school teacher at the elementary level. He had a special charisma and touch with children and their parents. Later he worked his way into administration and personnel management in one of the top positions of a district. He and his wife raised three sons who are all doing well. But then Dan began to notice some physical problems which turned out to be the first stages of a Parkinsons-like illness which has cut short his work career.

But that doesn’t stop Dan from serving and loving others. He has written a memoir and launched a blog titled wewillgoon.com. And that is what he does. On Thursdays he sings at a nearby convalescent hospital. That he gets there slowly and with a walker tells them it isn’t easy, but he does it because he knows his visits bring some light to the residents there.  He has made them part of his world. 

At Dan’s home I noticed a copy of Petersons The Message that he had received this Christmas. When he reads that passage I cited earlier where Jesus says,  “Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won’t lay anything heavy or ill-fitting on you. Keep company with me and you’ll learn to live freely and lightly,” I am certain he will say a loud amen!

And so can you if you will dare to come and see who Jesus is. If you want to explore how to begin that journey I will be up front here in the chancel after the service and will be glad to answer your questions as my friend John so patiently did for me my freshman year of college.-- All Rights Reserved Used by Permission of Rev. Jay Bartow 2017